What's a typical day for you? I live next-door to my family’s company where I work with family nearby, so I live on my own and am able to go to work next door on weekdays. Most days, I write for the blog I contribute to about being a (bad) Catholic dealing with FA. The blog is called Sick Pilgrim. Less often, I like to volunteer as a counselor in my area.

How long have you known you are living with FA? About 20 years.

Are there any others with FA in your family? My younger sister also has FA. She is 29. She and her husband have two incredible kids, and they live next door.

Describe your transition from walking to walker/wheelchair. My symptoms became apparent when I was in junior high/high school, so at a time when I most wanted to just fit in with everyone else, my clumsy walk and poor coordination made me stick out. I refused to accept the help from a wheelchair in high school, mostly because I was hardheaded. In college, I realized that there were no walls I could hold onto for support when I had to cross campus to get to class, so I finally agreed to use a wheelchair. And what really surprised me was that being in a wheelchair, instead of imprisoning me, gave me a small and newfound sense of freedom - no longer was I the one everyone had to wait for; no longer was I consistently putting all my strength into remaining upright. I would have scoffed at this idea, but found it to be absolutely true - that sometimes accepting help can make us more independent, not less.

What do you like to do to stay active and what type of exercises work for you to stay strong? I use a manual wheelchair as much as I can - even though I am not fast at all, I think it’s important to utilize some body movement in your normal motion. I ride either my recumbent trike or recumbent handcycle most afternoons, and love that as a form of exercising both my legs and my arms, respectively.

Do you have any hobbies or special interests? In my free time, I enjoy reading, blogging, watching movies, listening to podcasts, hanging out with friends, riding my handcycle, and having deep and quirky conversations.

What is a good trick to make daily life easier? Keep yourself as active as you can, and always surround yourself with trustworthy people who you can turn to during life’s highs and life’s lows.

When FA gets you down, what do you think/do to feel better? Listen to sad music and take an inventory of what I still am able to do - then get lost in one of those activities.

What is one way living with FA has POSITIVELY affected your life? Fantastic question. Not to sound too Pollyanna or like Stockholm Syndrome, FA is a blight, a genetic mutation the must be despised and eradicated. But sometimes going through trials has the side effect of making us wiser. So even though there is no question that the world must eliminate this debilitating disorder, I’ve tried to make the most of the deepening reality and the overwhelming empathy it’s offered.

What is a favorite motivational quote of yours? “Everything can be taken from a man but one thing: the last of the human freedoms—to choose one's attitude in any given set of circumstances, to choose one's own way.” Viktor E. Frankl

About the Author

The FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.

Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.

The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.